NAMI executive director Laurie Flynn testified this morning before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies for increased funding for severe mental illness research and services. In her testimony, Flynn focused not only on the need for additional resources for research, but also on the importance of focusing research dollars on the most severe and disabling brain disorders. Flynn also urged Congress to target proposed increases for the Mental Health Block Grant on PACT programs. The full text appears below.

STATEMENT OF LAURIE FLYNN
EXECUTIVE DIRECTOR

NATIONAL ALLIANCE FOR THE MENTALLY ILL

BEFORE THE HOUSE OF REPRESENTATIVES COMMITTEE ON APPROPRIATIONS SUBCOMMITTEE ON LABOR, HHS, EDUCATION AND RELATED AGENCIES

APRIL 29, 1999 10:00 a.m.

Chairman Porter and members of the Subcommittee, I am Laurie Flynn, executive director of the National Alliance for the Mentally Ill (NAMI). I am pleased today to offer NAMI’s views on the two agencies in the Subcommittee’s FY 2000 bill that are of tremendous concern to people with serious brain disorders and their families: the National Institute of Mental Health (NIMH) and the Center for Mental Health Services (CMHS) at the Substance Abuse and Mental Health Services Administration (SAMHSA).

Who is NAMI?

NAMI is the nation’s largest national organization, 208,000 members representing persons with serious brain disorders and their families. Through our 1,200 chapters and affiliates in all 50 states, we support education, outreach, advocacy and research on behalf of persons with serious brain disorders such as schizophrenia, manic depressive illness, major depression, severe anxiety disorders and major mental illnesses affecting children.

Mr. Chairman, for too long severe mental illness has been shrouded in stigma and discrimination. These illnesses have been misunderstood, feared, hidden, and often ignored by science. Only in the last decade have we seen the first real hope for people with these brain disorders through pioneering research that has uncovered both a biological basis for these brain disorders and treatments that work.

Research has proven that brain disorders are treatable. The current success rate for treating schizophrenia is 60 percent. The success rate for bipolar disorder has risen in recent years and now approaches 80 percent. For major depression, the rate has climbed to nearly 65 percent. These recent advances would not have been possible without substantial investment in biomedical research directed to the most complex organ in the human body, the brain.

Severe Mental Illness Research at the NIH

Mr. Chairman, I would like to thank you and your colleague Mr. Obey for the leadership you have displayed in recent years in bringing significant increases to the National Institutes of Health (NIH) budget. Biomedical research and the NIH are central to improved treatments for severe mental illnesses and ultimately the cure of these disabling brain disorders. NAMI’s consumer and family membership is deeply grateful for this bipartisan effort to make biomedical research a top national priority.

At this point, as we come to the close of the Decade of the Brain—an initiative that grew out of the leadership of your late colleagues Chairman Bill Natcher and Ranking Member Silvio Conte—it is important for us to put into perspective the gains we have witnessed in brain science that have benefited people with serious brain diseases such as schizophrenia and other severe mental illnesses. We also need to plan for the future gains that are so necessary.

Why We Desperately Need Severe Mental Illness Research

I noted earlier that severe mental illnesses are often quite effectively treated. In fact, tremendous advances in treatment of severe mental illnesses occurred during the last ten years, the Decade of the Brain, from the introduction of Prozac and Clozapine, which have virtually revolutionized mental illness treatment. Today, many more consumers, patients with serious mental illnesses, stand able to take charge of their lives, to be productive, to enjoy recovery, because of these treatment advances.

But we should not underestimate how much more must be learned. The brain regions involved in these serious mental disorders, the molecules at the roots of the terrible symptoms, the genes that lead to vulnerability to these illnesses remain to be fully probed. The Decade of the Brain has really only brought us to the threshold of discovery when it comes to brain diseases such as schizophrenia, manic-depressive illness, obsessive-compulsive disorder, and others. We are only now poised to fully probe and finally understand the biological underpinnings of the most serious mental illnesses.

Treatment for mental illnesses, while impressive and comparable to some of the best treatments in all of medicine, are still unacceptable for patients, families, and our society. Many people with severe mental illnesses find only incomplete relief from their symptoms; disability is still all too commonly associated with these illnesses. For bipolar disorder, or manic-depressive illness, treatment works for many much of the time, but not for all and not for all symptoms. Individuals with obsessive-compulsive disorder, a brain disorder we have pinpointed to specific higher regions of the brain, still often fail to achieve much gain in treatment. For children matters are worse because we know so little about the illnesses as they emerge during development, and we know even less about how to effectively and safely treat them.

The national need for severe mental illness research is most starkly demonstrated by particularly terrible statistics. Our nation stands in the midst of a virtual catastrophe: a suicide epidemic. Suicide is the eighth most common cause of death in this country and the fourth most frequent cause of life lost under age 65. Rates are increasing among young men and the elderly. As it stands, 30,000 Americans will die by suicide this year, most of whom have a serious mental illness. The most severe mental illnesses—schizophrenia and bipolar disorder—disproportionately lead to suicide. Ten percent of the 2,000,000 U.S. citizens with schizophrenia are taking their lives; about half will make a suicide attempt at some point. Fifteen percent to 20 percent of the approximately 2,000,000 Americans with bipolar illness will die by suicide.

That severe mental illness research ought to be a priority for our nation is also demonstrated by data from the World Bank and World Health Organization. Severe mental illnesses—major depression, bipolar disorder, schizophrenia, and obsessive-compulsive disorder—account for four of the top 10 most disabling illnesses in the world. These brain disorders account for an estimated 20 percent of total disability resulting from all diseases and injuries.

I hope that this summary of the problem posed by severe mental illnesses convinces you that severe mental illness research must be a priority, especially given the scientific opportunities that exist in the brain sciences. Let me concentrate now on what we think are sound goals for NIH and NIMH, respectively, so that we can bring the full force of our research to bear on this most important health emergency.

NIH Investment: A Call for Increased Funding & Accountability

We applaud your leadership in supporting increases for the NIH. NAMI urges the Subcommittee to follow the recommendations of the scientific community and the Ad Hoc Group for Medical Research Funding and increase overall funding for NIH by $2.3 billion (a 15 percent boost) for fiscal year 2000.

But increased resources is not the only important objective for NIH: better accountability is also essential. We at NAMI also applaud your efforts to fairly boost NIH funding and limit disease-of-the week approaches to appropriations. Research support at the basic level as well as in diseases is all-important, as is investment in basic technological development and research, in computer sciences and physics, to name but a few. Nonetheless, we urge you to press NIH to invest their resources according to public health need as well as scientific opportunity, as the Institute of Medicine report from last year called for. If NIH is to be in the forefront of the public health improvements that will lead to the most benefit for the people of this nation who support it through their tax dollars, NIH must balance its investment among diseases so that not the loudest advocate or the most connected advocacy group wins research investment, but so that the most disabling and costly illnesses facing the nation are prioritized. Obviously, severe mental illnesses would and should be a top research priority. Yet, based on NIH’s own recent estimates, $1.00 is invested in research for every $6.86 in costs of AIDS, $9.96 in costs of cancer, $65.65 in costs of heart disease, and $161.26 costs in schizophrenia. In other words, 15 cents is spent on AIDS research per dollar of costs, compared with 10 cents for cancer, two cents for heart disease, and less than one cent for schizophrenia. This is obviously not a wise research investment strategy for the United States.

Also on the accountability front, we are very concerned that NIH has not developed a consistent definition of neuroscience research and applied it evenly across the institutes. According to our own analysis, which we are preparing to release, it is almost impossible to discern how much the NIH spends on neuroscience research across 20 of its 24 institutes. In short, at the end of the Decade of the Brain we cannot reliably say how much has been spent on neuroscience research—even though it offers tremendous opportunities and is crucial to some of the most disabling illnesses facing this nation. Moreover, NIH estimates of investment in clinical research are also questionable. We urge you to press NIH to develop a more consistent and accurate approach to accounting for its neuroscience investment as well as its clinical research—these are crucial data for you as leading science policy makers as well as for us, who represent those with severe brain disorders whose best hope lies in research.

NIMH: The Key to the Cure for Severe Mental Illnesses

For NIMH, we also applaud this Subcommittee’s leadership, demonstrated by your boosting its appropriations significantly in the past few years and by nearly 15 percent in fiscal year 1999, up to its current level of $861 million. This is the year, Mr. Chairman, that NIMH should go over the $1 billion mark. Why? Not only are severe mental illnesses among the most costly facing our nation, as I have described above. Not only does neuroscience offer tremendous opportunities for advances, as is clear. Only with a 18 percent increase in its budget, to $1 billion dollars, would NIMH be able to have a success rate for its reviewed grants of 1/3, funding 754 new and competing grants. The President’s budget proposal, which would permit the smallest annual increase for NIH in the past two decades, would only allow for the funding of 455 new and competing grants—a 20 percent success rate. This at a time when NIMH is attracting more research grant applications than any other institute due to the leadership of the institute and the tremendous research opportunities that exist in the neuroscience’s and in severe mental illness research. We absolutely should ensure that this time of interest, strong leadership, and research opportunity is taken—so that people with serious brain diseases have the best hope for the future, for themselves and for their families and future generations.

We urge you, Mr. Chairman, to help ensure that NIMH continues its move to spend its tax-payer dollars wisely, with investments in basic neuroscience and molecular biology that will undergird the new treatment frontier for severe mental illnesses and also with strong commitments to serious brain disorder pre-clinical, clinical, and services research. NIMH should continue its efforts to identify genes linked to severe mental illnesses; to fund and expand clinical research into psychotic illnesses, serious disorders in children, and in mood disorders; to continue the probe of the biology of serious mental disorders including schizophrenia, mood, and anxiety disorders. NIMH should also use the tools of behavioral science to better understand the expression and best treatment of severe mental illnesses. But research in prevention and psychosocial research must be aimed at serious mental illnesses. We cannot go back to the days, as NIMH’s own advisory council lamented of a prevention research portfolio that by definition excluded serious mental illness research and instead focused only on social problems such as child abuse, divorce or poor self-esteem so as to improve the nation’s mental health. We cannot let another five years and $40 million go to studying children who misbehave while we know so little about serious mental illnesses in children and how to effectively treat these disorders.

We know that serious mental illnesses are brain disorders, are treatable, and are extremely costly—we know the kinds of research that is needed to eradicate these problems. We cannot permit the federal government to avoid addressing these most pressing public health problems in an effort to promote well-being and self-esteem in the population, or, more accurately, to promote full employment of mental health counselors and researchers, while our nation’s most disabled citizens with the most costly diseases to the country are ignored.

What research issues are most compelling for our members, the more than 200,000 Americans facing a serious brain disorder? More basic research on the brain and higher brain functioning. More pre-clinical research on the genes, molecules, and brain regions involved in severe mental illnesses. More clinical research aimed at understanding the best treatment for these serious disorders and translating that research into practice. More research aimed at finally better understanding and treating these brain disorders in children. Research aimed at diminishing relapse and disability in severe mental illnesses. More research on how people with severe mental illnesses best receive treatment and services. An accountable and responsible research investment strategy that will help the nation’s individuals with severe mental illnesses and their families, as well as the country at large, which must shoulder the burden and costs of these illnesses.

SAMHSA & CMHS

Mr. Chairman, in addition to urging the Subcommittee to support increased funding for brain research, I would also like to note the importance of federally funded mental illness services through the Center for Mental Health Services at SAMHSA. Federal support for community-based care is a critical resource for people with the most severe mental illnesses. With many states reducing their psychiatric hospital beds and a growing number moving toward managed care systems, the federal investment in community-based care continues to grow in importance. For example, funding for the Mental Health Block Grant (MHBG) now constitutes nearly 40 percent of all non-institutional services spending in some states.

In the President’s FY 2000 budget proposal, a 24 percent increase is proposed for the MHBG (up from its FY 1999 appropriation of $288.8 million to $358.8 million). MHBG funding has remained frozen since FY 1992. Since that time, we have witnessed the continued widening of gaps in the public mental illness treatment system in many states. The consequences of these emerging cracks in the service system are readily apparent, not just to NAMI’s consumer and family membership, but also to the public: the growing number of homeless adults on our nation’s streets who receive no treatment services, well publicized tragic incidents involving individuals with severe mental illness who are not accessing adequate treatment services and the growing trend of "criminalization" of mental illness and the stress it is placing on state and local jails and prisons.

The causes of these growing gaps in the services are varied and complicated: the trend toward privatizing state Medicaid programs through contracting with private managed care firms, cuts in Medicaid Disproportionate Share Hospital (DSH) funding and expansion of the mission of public mental health programs beyond serving the most severely disabled consumers. Moreover, in recent years state mental health agency budgets have been under increasing pressure as a result of forces beyond their control. Among these forces are restrictions on eligibility for SSI and SSDI for people whose disability is based in part on drug abuse or alcoholism and a 1997 U.S. Supreme Court decision allowing states to commit sexually violent predators to state hospitals. NAMI therefore believes that this increase in funding for the MHBG is long overdue.

In addition to supporting the Administration’s proposed increase, NAMI further recommends that the Subcommittee target all additional funds for the MHBG in FY 2000 to state and local evidence-based, outreach-oriented service-delivery models for persons with severe mental illness in the community. In particular, NAMI urges that any increase in MHBG funding be directed to assertive community treatment, including the Program of Assertive Community Treatment, or PACT.PACT programs use a 24-hour, seven day-a-week, team approach that delivers comprehensive treatment, rehabilitation and support services in community settings. High-quality PACT programs are typically implemented at a cost that is significantly less than placing an individual in a jail, a residential treatment program or a hospital. PACT is especially effective in serving persons who are the most treatment resistant, persons with a co-occuring mental illness and substance abuse disorder and persons who are high users of inpatient hospitalization services.

In addition, NAMI recommends that the Subcommittee consider requiring states to report an unduplicated count of persons served by diagnosis, age, and services consumed using the targeted initiative MHBG funds.

NAMI is also concerned that the Substance Abuse Treatment and Prevention Block Grant is not currently supporting programs serving persons dually diagnosed with mental illness and addictive disorders. Evidence-based research, as confirmed by the NIH, verifies that integrated treatment, as opposed to parallel collaborative or sequential approaches, is the most effective model for serving persons with a dual diagnosis. NAMI therefore recommends that the Subcommittee direct SAMHSA to allow states to use funding from both programs to promote integrated treatment services for persons with co-occuring mental illness and addictive disorders.

NAMI is pleased that the President’s FY 2000 budget includes a proposed $5 million increase for the PATH program (up from its current $26 million, to $31 million). PATH is a formula grant program to the states to support local programs serving homeless persons with severe mental illness. This increase in PATH funding will help communities all across the country increase access to treatment and supports for the growing number of homeless with severe mental illnesses.

Finally, with respect to CMHS’s Knowledge, Development and Application (KDA) program, NAMI would like to cite the important work of the agency’s Survey and Analysis Branch in helping to assess the impact that changes in our healthcare system are having on persons with severe mental illnesses and their families. The growth of family education and peer support over the last decade has undoubtedly made a significant contribution to the reduction of inappropriate hospitalization and substantial long-term savings to the nation. Given the insufficient level of housing and rehabilitation opportunities at the community level, NAMI believes that CMHS can and should be doing more to support the role of family as caregiver. This crucial investment in our public system can and should be continued through family and consumer outreach as an essential use of CMHS’s KDA resources.

Moreover, in our rapidly changing healthcare environment, it is becoming increasingly important for people with serious brain disorders and their families to serve as monitors of adequate and high quality treatment–especially in the area of Medicaid managed care and the reconfiguration of the public mental health system in many states. NAMI believes that CMHS should use its resources to assist consumers and families to fulfill this important role.

Conclusion

Mr. Chairman, thank you for the opportunity to offer NAMI’s views on FY 2000 funding for programs of critical importance to people with serious brain disorders. NAMI looks forward to working with you in the coming months to educate both the general public and your colleagues in Congress about the critical importance of investment in biomedical research.